When Neil started a new job in 2008, the questions started the first time his pump beeped. "Wait, what's that?" "You have to do that how many times a day?" And his personal favorite, "You can't eat that, right?" Good people, honest questions....
The episode, word for word
When I started a new job in 2008, nobody there knew I had type 1, and for the first time in years it wasn't because I was hiding it. It just hadn't come up. And then it came up. Every time my pump beeped, or I changed a site, or I pulled out a syringe, the questions started.
"Wait, what's that?"
"You have to do that how many times a day?"
"You can't eat that, right?"
That last one. My personal favorite. It's the diabetes version of "Is butter a carb?" Yes, Regina. And I can have it.
And I want to be clear, those were good people asking honest questions. But I'd spent 10 years before that doing everything I could to make sure nobody ever asked. Because I was sure the question after the question was going to be "so what did you do to get it?"
I'm Neil Greathouse, this is Your Best T1D Year.
It's November 9th. Awareness Month. World Diabetes Day is Saturday, and the whole internet's about to turn blue for a week. And I want to talk about why it took me a decade to say "I have type 1 diabetes" out loud to a stranger without wanting to leave the room.
Okay, here's the principle. Telling your story is hard because most of us expect to get judged for it. And that expectation isn't paranoia. It's data.
Here's the science. 2017, Clinical Diabetes, a researcher named Nancy Liu with the team at diaTribe. They surveyed thousands of people with diabetes and asked a simple question. Does diabetes come with a stigma? 76 percent of people with type 1 said yes. 3 out of 4 of us. That's a higher approval rating than any sitcom finale, and we're not even happy about it.
And the group that felt it most was the parents of kids with type 1. 83 percent. The moms and dads. Because they're not just carrying the judgment about the disease, they're carrying the judgment about whether they caused it, whether they're handling it right, whether they're being "too much" at the school, because some woman at the PTA watched you check a number before cupcakes and formed an entire opinion. If you're a parent listening, you're not imagining it. It's real, and you're carrying more of it than anybody.
One more line from that study. The people with the highest A1Cs felt the most stigma. So the people who most need help feel most judged for needing it. The disease makes you need people and the stigma makes you hide from them.
And here's the thing about Awareness Month that took me years to figure out. I used to think it was for them. The coworkers, the "can you eat that" crowd. Educate the public, change the world. And look, that's nice. But Awareness Month is the one week a year the rest of us are loud enough that the newly diagnosed person, the one hiding in a bathroom stall somewhere right now, can find us. It's a lighthouse for one boat.
So this week's ask is a half step braver than last week, and I'll give you the exact words so you don't have to think about it.
Send one DM to one person in this space. Somebody you've been following. Somebody from the list. A stranger with a sensor on their arm in their profile picture. Here's the whole message. "Saw your post. I get it. That's all." 7 words. You don't need a follow-up or a conversation. You're just letting somebody know they're not the only one in the room.
And here's the extra one, for those of you who are ready. Post one true thing about your type 1. Not a post, a story. Something that disappears in 24 hours. Like a Vine. Remember Vines? 6 seconds, gone forever, and somehow more culturally important than most movies. "Sensor change day." "Low at 3am, still here." The reason it's a story is that stories expire, and that lowers the price of admission. You can be brave for 24 hours. I know you can.
Parents, partners, caregivers, same ask from your side. DM another parent. Post the story from where you sit. You're the 83 percent. You get to be loud too.
Tomorrow's Tuesday. The Nonprofits. 7 organizations that will help you for free, and I mean help, not "donate here." And if you still need somewhere to send your 7 words, the Helpers from last Tuesday answer DMs at 11pm. Start there.
The poll closes Sunday, so if you haven't done it, it's on yourbestt1dyear.com.
You're not doing a bad job. You're doing a difficult job, in a world that mostly doesn't know what this is and sometimes thinks it's your fault.
We are the ones. The ones living with it, the ones loving somebody who has it, the caregivers who feel it worst, the kiddos. All of us. My name is Neil. Wednesday, what awareness is actually for, and how to tell your story in one sentence. See you then.
This is the episode script as read on the mic. It's education and encouragement, not medical advice. Talk to your care team before changing anything about your management.
